family caregiver

There are an estimated 3.3 million family caregivers in Ontario – nearly a third of the population – and we know that these numbers are only increasing.

As more and more Ontarians become caregivers every day, we wanted to create something to help them on their caregiver journey, and to help the healthcare providers who work with them.

So, we worked closely with family caregiver Carole Ann Alloway to create The Caregiver Wishlist, a set of videos based on some of Carole Ann’s ideas, and brought to life in a workshop with 16 family caregivers from across Ontario, with diverse caregiving experiences.

We know that no two caregiving experiences are the same, but the wish for better communications, caregiver identification, assistance with system navigation, respect and empathy from healthcare providers, discharge training and more transcend disease, diagnosis and journey.

Becoming a caregiver can be an overwhelming and confusing experience, but knowledge is power. The Caregiver Wishlist discusses some of the things you can expect, and some of the things you can do to make your experience a little less stressful.

Their journeys, their voices, their wishlist – What’s on your Caregiver Wishlist?

The Caregiver Wishlist illustrates the advantages of engaging patients and family caregivers in the healthcare team, as well as small things that healthcare providers can do to improve the caregiver’s, and ultimately the patient’s, experience.

We hope these videos spark transformation and a co-designed approach to patient care, including family caregivers in each step of the patient journey.

The Caregiver Wishlist

Co-Design in Action

It’s hard to believe that it’s been a year since the four Changing CARE teams launched their innovative, caregiver-focused projects.

One year, 15 cross-cutting working group sessions, 17 bi-weekly project managers meetings, and numerous steering committee meetings, to be more precise. Most impressively, across the four teams, more than 650 caregivers have participated, informed and partnered on the change they’d like to see.

Over the course of that year, the teams have gone through their planning phases, completed local discovery and engagement, and moved to design and implementation, all within the context of co-design.

When we selected the four teams, we were focused on finding partnerships and teams that truly understood the critical role caregivers play in the health care system, and embraced the need for change. What was so interesting—but also caused some hesitation—was that these four projects were so diverse in scope, design and implementation. It wasn’t clear how they’d be able to collaborate and build on each other’s work and learnings.

It didn’t take long to see the magic of how they’d all work together. I think that’s one of the key learnings from our project so far—that when people come together with a common purpose, no matter how diverse the teams are, there’s always something to learn from each other.

There’s no place that this is more evident than at the bi-weekly project managers’ meetings that bring these teams together to share ideas, problem solve, learn from each other and celebrate successes. These meetings have become integral to Changing CARE.

Yes, that’s right. This is a blog post to celebrate meetings.

At their best, these meetings are an open dialogue on how to leverage each other’s experiences and work, and to inform and improve the other projects. This is not to say that these meetings aren’t on occasion simply a laundry list of what the teams are working on. But that’s okay because it’s important for the other project managers to know they are not alone in the day-to-day operations of this type of innovative project.

There are three things that contribute to the overall effectiveness of the bi-weekly project managers meetings

Shared values: Every phase of these projects is co-designed with caregivers as equal decision-makers alongside providers and administrators. Each of the teams, and their respective organizations and partners, recognize the value caregivers bring to the health system. This is a shared commitment not just to the process of co-design, but to the principles that underpin it. These project teams listen and learn together, are flexible, adapt and embrace ambiguity.

Joint accountability: The project managers chair the meetings and everyone informs the agenda. The project managers make a concerted effort to participate and come prepared to share the work from their projects. The Change Foundation acts as an equal partner by hosting the meeting, contributing to the agenda items and information which would be useful to all the teams, and taking notes.

Operational Efficiency: There is a standing meeting date and time for the entire three-year duration of the project. The project managers know when it is and where to go, there are no surprises. The agenda is posted, The Change Foundation acts as host, and discussion notes are posted following each meeting. We use video-conferencing so we can see our colleagues from across the province.

My two metrics for measuring the success of these meetings are:

No matter how busy, the project managers’ show up for the calls and;

No matter how often I ask about cancelling the meetings, the answer is always a resounding no.

Over the past year, I’ve had the privilege to be The Change Foundation participant on these bi-weekly project managers’ calls, and am impressed and inspired by the commitment of these individuals to improve the caregiver experience.

Today – on Family Caregiver Day – Premier Kathleen Wynne announced the Ontario Ministry of Health and Long-Term Care’s intention to provide $6.5 million in funding for the creation of a caregiver organization in our province.

This was a key recommendation in the report Expanding Caregiver Support in Ontario, authored by Janet Beed, which was released publicly in March 2018. Janet has been acting as an external advisor to the Ministry of Health and Long-Term Care to examine gaps in supports for caregivers in Ontario over the past year, and will serve as the organization’s inaugural Chair.

According to today’s announcement, the Ontario Caregiver Organization will be a “resource for caregivers that will make it easier for them to access a range of services and information.” The not-for-profit corporation will receive financial support, but be arms-length, from the government.

A website has been set up for the organization, where you can learn more, and follow their progress over the months to come.

The Change Foundation’s role in the new caregiver organization

The Change Foundation has played an important advisory role in shaping this organization and we will continue to support it as it opens in 2018.

We exist to innovate and shape emerging areas in health care. Since 2015, we’ve been doing just that by focusing squarely on the caregiver experience in Ontario, as we laid out in our strategic plan, Out of the Shadows and Into the Circle.

We are honoured to offer our advice and expertise, as it is rooted in the knowledge and insight we’ve gained these last few years listening to, learning from and collaborating with family caregivers. That’s the foundation for our understanding of what changes will make the biggest difference to caregivers.

We look forward to seeing the impact this new organization will have on the lives and experiences of caregivers in Ontario.

When we hosted Ontario’s first ever young carers forum in late November, 2017, we shined a long overdue spotlight on Ontario’s young carers. We asked the young carers present—a group that is too often overlooked— to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of them, the forum was the first time they had ever interacted with other young carers, the first time they were asked about their experience, and the first time they felt like the experiences they were sharing could make a difference.

We asked them what action was needed around awareness, identification of young carers, advocacy, and cultural considerations. And what do we need to do to make change happen?

Throughout the day, the most pressing issue became clear: there is a profound and universal lack of understanding and awareness around the role of young carers.

And this lack of understanding is not system agnostic. Young carers experience it throughout the healthcare and education systems. Often, this lack of understanding and awareness translates into stigma and fear.

What’s surprising about this? And how do we tackle it?

There are very few of us who will never wear the caregiver hat. However, for young carers, this hat is worn at a much earlier age than most.

There is an underlying fear among many young carers about the stigma and misunderstanding of their role. The young carers at the Forum said that often, friends and schoolmates have a hard time understanding that their caregiving role is not a choice–that they have a duty and a responsibility that many of their peers simply cannot understand or relate to. This is largely due to this lack of understanding.

To combat the issue of awareness, one suggestion from the Young Carers Forum was that we celebrate Young Carers Awareness Day on January 25, 2018, like they do in the UK. So that’s exactly what we are doing: a simple social media blitz that we hope will contribute to the growing awareness throughout the province.

We hope we won’t be alone in this. We want you to join the conversation we’re helping to spark online.

Follow #YCAD on Twitter throughout the month and join the conversation on January 25th at 4 p.m., as we host a tweetchat on young carer awareness co-moderated by Fitsum Areguy, an Ontario Young Carer (see below for more information on the tweetchat).

As we work through our “next steps” as an organization, it is very clear just how valuable and meaningful the act of coming together with a common experience was for these incredible young people. We just need to listen to and read the comments from young carers to realize how important this is.

One young carer said: “This was life-changing. I’ve never talked about my experience before. It’s always about my sister.” Another stated: “I feel like I have made a big influence on the future of young carers and no longer feel alone in my situation.”

We’ve often tweeted and blogged about the lack of supports available to Ontario’s young carers. We are now moving forward with the first step to increase awareness and understanding in the hopes that this will lead to better and more widely accessible supports.

Olivia’s caregiving experience is unique due the fact that she is a young carer. Young carers are children, youth, and young adults who provide care and support to a family member with a health issue. It’s estimated that approximately 17% of Ontario caregivers are between the ages of 15 and 24. They are often referred to as an invisible population, as very few people are aware of their situation.

The eldest of four siblings, two of which have Autism and ADHD, Olivia has been the long-time right hand for her mom Lianne, a role which intensified when Olivia’s father Tim was also diagnosed with Autism and ADHD in his 40’s and who suffers from debilitating migraines as a result.

“Olivia was my gift from the universe and my gift to the universe,” says Lianne.

Lianne describes Olivia as fiercely protective of her family, noting that many of Olivia’s friends growing up didn’t understand the need for Olivia to help her brothers off the school bus, or her responsibilities to be at home to assist her mom.

Like many young carers, Olivia has maturity beyond her years, describing her biggest caregiving challenge during high school as simply “staying sane.” To do this, Olivia found solace in drama, which helped to alleviate her anxiety, and also turned to books as a way to escape.

Olivia also found support through the Powerhouse Project, an inter-agency strategy that offers activities and programs for young carers in the Niagara region and Haldimand and Norfolk counties. The Powerhouse Project gives young carers a much needed break from their regular caregiving duties and connects them with young people in similar situations.

“[Powerhouse] is a place where you can just ‘be’ and there are other people who understand,” says Olivia.

Recently eight young carers from the Powerhouse Project, including Olivia, took part in a one-week digital story telling workshop hosted by The Change Foundation in collaboration with Project ReVision, a program of the University of Guelph. Armed with cameras, laptops, and recording equipment, each young carer had the chance to learn and create their own short film about their caregiving experience.

Lianne says this experience opened Olivia’s eyes to a new medium of expression and storytelling.

Now Olivia finds herself at the start of a new experience. After graduating from Laura Secord Secondary School in St. Catharines with a glittering scholastic record (though Olivia is compelled by modesty to mention two B’s in her Grade 12 year), she has just started her first year at Brock University in the Concurrent Education program.

However, with this new opportunity to start making a life on her own, Olivia is also debating whether she wants to caregiving to be part of professional life as well.

But if possessing this foresight, thoughtfulness, and poise say anything about Olivia, it’s that she’s a dynamic young woman and carer with a bright future ahead of her.

In April 2015, The Change Foundation launched our 2015-2020 strategic plan. In that document, we knew that the experience of family caregivers is inextricably linked to the experience of the people they are caring for. However, we knew we needed to know more in order to fully understand the breadth and depth of the family caregiver experience in Ontario.

Out of the Shadows and Into the Circle: From Listening and Learning to Action details The Change Foundation’s listening and learning process throughout 2015-16. It provides an overview of what we heard from Ontario’s family caregivers and health providers through various research and engagement activities. The report also outlines the direction and next steps that will be taken as we enter the “incubate and innovate” phase of our strategic plan.

Specifically, the report gives a deeper outline of the four thematic challenges outlined by family caregivers:

Recognition of the family caregiver role and responsibilities

Recognition of the caregiving role needs to be acknowledged by both caregivers themselves and by the patient’s health care team. Our contention is that caregivers need to be a member of the health care team – valued and respected for their role in the patient’s journey.

Communication between caregivers and system providers

There is often a lack of information and communication with caregivers about what to expect regarding the patient’s condition—from the anticipated care trajectory to the expectations inherent in a caregiving role.

Family caregiver identification and assessment of caregiver needs

Currently, there is little assessment of the abilities family caregivers have and what resources they might need once their caregiving role begins. To compound that, ongoing check-ins with caregivers to assess their needs or physical/emotional state rarely happens.

Support, training and education for caregivers

Caregivers want and need support, education, and skills training to help them in their role. Simply needing “a break” was top of mind, yet many caregivers and providers struggle to find programs and resources to make this happen.

These four themes from the report serve as the basis for Changing CARE, The Change Foundation’s funding initiative for Ontario health care delivery/service organizations.

Just as we welcome a new season and warm weather returns, we at The Change Foundation (TCF) are feeling very energized as we move into new phases of our work.

Doing a deep dive into family caregiver issues through grassroots engagement and research has underscored for us just how imperative it is that we continue to focus on integrating and supporting family caregivers as a way to improve the patient and family experience.

At TCF, we believe that this mix of strong engagement and strong research also allows for a unique, more inclusive perspective on how change can be achieved in health care.

Look no further than the past six months as an example, which has seen us release a number of research publications, reach out to both family caregivers and health providers (click to learn more), and continue to share our knowledge at a number of conferences and stakeholder meetings. These kinds of activities are the crux of our approach to evolve Ontario’s health care sector.

Another good example can easily be seen with our Shedding New Light report series. Researched and written by family caregiver Sara Shearkhani, Shedding New Light offers a glimpse into Sara’s caregiving journey, and her struggle with evolving personal responsibilities. These reflections stand alongside a literature review on the stages of caregiving. Overall, the reports serve as important examples of how evidence and lived experience can be used to tell a meaningful caregiving story.

Although it’s encouraging to see evolving literature like this, the more we learn, the more we understand just how much work still needs to be done.

This is especially important from a policy perspective. In this issue’s commentary piece, Lori Hale and Stephanie Hylmar bring forward four key emerging themes for increased stakeholder consideration and action, as identified through The Caring Experience project. These themes are directly informed form our engagement with both family caregivers and Ontario’s health providers and serve as an important starting point for TCF’s next phase of strategic work.

Furthermore, at the launch of our latest report, A Profile of Family Caregivers in Ontario, we issued a call to action for ourselves for the next phase of our strategic plan. Coinciding with the release of that report, dedicated planning has started at TCF to develop the next round of funding opportunities and partnerships aimed at improving family caregiver experiences.

Now is the time for introspection for The Change Foundation to fully realize these opportunities. More importantly, it’s an added chance to ask ourselves how we can continue to be Ontario’s neutral sandbox for positive health care collaboration.

Whatever funding opportunities are developed, they will undeniably involve both family caregivers and health providers as equal partners, with a focus on creating made-in-Ontario solutions that will lead the way in improving caregiver and patient experiences in the province.

With this approach, we can continue to be the catalyst for change in Ontario health care.

Meet Chase. He’s a dare devil. He thrives on adrenaline. No roller coaster is fast enough. He lives for excitement, sometimes waiting at the end of his driveway to wave at all the drivers going by, hoping that they’ll honk their horns in return.

When you pictured Chase, you likely didn’t see a teenage boy in a wheelchair who is non-verbal. Chase was born with cerebral palsy (CP) and needs round-the-clock care.

Now, meet Lisa. Lisa is Chase’s mom and his full-time family caregiver.

From the day that Chase came into Lisa’s life, she has been constantly monitoring and managing Chase’s chest and breathing, contractures and skin integrity, due to his spastic quadriplegia. To help with this, he has a G-tube to vent him and needs lots of re-positioning throughout the day and night.

And, seven years ago, he had intestinal failure which no one expected him to survive. He did, and now his day-to-day care is much more involved. He is TPN dependent and runs an IV for 23.5 hours a day, only unhooked for bathing. The femoral line is in his groin which takes constant monitoring and hyper vigilance with dressing changes once a week. It also means he often has belly pain especially at night.

To most, Chase’s daily caring needs seem overwhelming. But Lisa has a different perspective, “Chase is on this earth for a reason, and I just want to help him enjoy his life and bringing meaning to it.”

Lisa’s caregiving journey hasn’t been an easy one. It’s been full of ups and downs and a never-ending commitment to advocating for the services and supports that Chase needs.

It has taken a financial and physical toll. Based on her caregiving demands, Lisa essentially gave up her career. Lisa wears wrist braces at night from the wear and tear of lifting and caring for him. And, unsurprisingly, she rarely gets a full night’s sleep.

Walking through Strathroy’s small downtown, it doesn’t take long to realize that Lisa and Chase are mini celebrities in their own town. They are shining examples of how one person’s challenges can benefit many others along the way. Put simply, Lisa and Chase are catalysts for positive change.
Take the accessible playground near Chase’s house. Lisa and her husband were on the planning committee that got it built. Or consider the cadre of nurses and PSWs who have provided home care to Chase over the years – they have all gained skills in how to support and care for people with complex health conditions. And probably most importantly, Lisa and Chase have paved the way for many others to have access to self-directed care.

For many years, Chase’s home-based care was coordinated by their local Community Care Access Centre (CCAC). Beyond the administrative challenges of not being able to coordinate care directly with care providers, it also meant that Lisa and her family were opening their home each day to an always-changing group of people. To complicate matters, not all the providers had the skills required to address Chase’s complex needs.

Lisa spent many hours fighting to get self-directed care so she could choose and coordinate which providers care for Chase. “It’s changed our lives,” Lisa explains, “I feel like I have control over our lives for the first time in a long time.”

When you ask Lisa and Chase what keeps them going each day, Lisa is quick to respond, “Happiness and love.”

And when you meet Chase and spend a bit of time with him, the happiness and love he feels comes shining through.

On April 27, 2016, Ontario policy makers, health professionals, family caregivers, and patients met to hear Heléna Herklots, Chief Executive of CarersUK speak on the development of supportive policy for caregivers in the United Kingdom and what Ontario can learn from the UK experience. Family caregiver and author Katherine Arnup, PhD, also addressed those in attendance with a moving response based on her own experience providing care for her sister and parents.

If you were unable to attend this latest edition of Hot Talks, a full video and a selection of photos from the event is available below.

Webcast Video

Photo Gallery

In March 2015, The Change Foundation formally released Out of the Shadows and Into the Circle, its 2015-2020 strategic plan focused on improving the experiences of family caregivers in the Ontario health care system and their interactions with health providers.

The first year of the strategic plan outlined a comprehensive period of research into the existing literature, legislation, and policy documents that currently exist on the stages and experiences attributed to caregiving. As part of this process, Sara Shearkhani worked with The Change Foundation to complete a literature review to summarize and synthesize the last two decades of caregiving research, as well as to reflect on her own experience as a caregiver.

Sara’s experience as both a researcher and a family caregiver helps to bring a unique perspective to the roles and responsibilities inherent in caregiving. Her reflections present a poignant picture of someone wrestling with the evolving real-time experience of being a caregiver, while also finding answers and insight in academic, peer-reviewed literature.

Shedding New Light: One Caregiver’s journey is the result of Sara’s work. It features an executive summary of the comprehensive literature review completed by Sara as well as her reflections on her own caregiving journey. Together, the papers that make up Shedding New Light provide a balanced and comprehensive standpoint on how the role of caregiving can be viewed.

The Change Foundation gratefully acknowledges and thanks Sara for her dedication and thoughtful approach to this work.

Whether you are working side-by-side, collaborating across teams or co-designing between organizations finding your shared purpose allows for a better end result. Determine your shared sense of purpose together to achieve your common goals. #codesigntwitter.com/JodemeGoldhar/…

Regardless of where your organization is in terms of caregiver involvement - building the case, starting the conversation, ready to implement or evaluating the impact - we're confident there's something in our new toolkit to help you out!
Take a look now: bit.ly/2HyePswpic.twitter.com/puR8hKQlF2

We recently surveyed 800 caregivers across Ontario – 71 of who were young carers – and released the results in our Spotlight on Ontario’s Caregivers report. Find out what they said: bit.ly/2QOu1RGpic.twitter.com/wJD0Nl81nV

61% of caregivers admitted they are caregiving because they have no choice.
Our Spotlight on Ontario’s Caregivers report provides a fuller picture on the caregiving experience: bit.ly/2zRU6Jfpic.twitter.com/1teFTF9UiX